Support swells for woman in desperate need of double organ transplant

Hundreds of Kiwis are backing young woman's petition to make organ donation mandatory in New Zealand as she desperately waits for a call telling her there is a match for the organs she needs.

August 7, 2018

By Nikki Preston

Hundreds of Kiwis are backing young woman’s petition to make organ donation mandatory in New Zealand as she desperately waits for a call telling her there is a match for the organs she needs.

Jessica Manning, 25, who has been has been told she will die within two years if she does not have a double organ transplant, is hoping the petition will start families talking about whether or not they want to be organ donors. More than 700 people had already signed it.

Even though the number of people donating organs in New Zealand had doubled over the last five years, Organ Donation NZ said more were still needed.

On average there were 550 people waiting for an organ transplant at any one time and the largest and longest wait list was for kidneys.

Manning was born with six heart conditions – a double inlet left ventricle, hypoplastic right ventricle, atrial septal defect, ventricular septal defect, transposition of the great arteries and leaky valves – and in 2016 discovered she had severe liver disease as a side effect of one of her many heart surgeries.

“I only have a few years to live without it (the transplant). I’m on the verge of liver cirrhosis which is little lumps on the liver which turn into tumours.”

She had been on the wait list for a heart and liver transplant for 16 months – four months longer than the average wait for two organs and about seven months longer than the average wait for just one organ.

She has her phone glued to her so as not to miss the life-saving call when it comes.

And when she does get the call, she will have just two hours to get to hospital and be prepped for what she has described as a very risky surgery.

Jess Manning, aged 24 from Auckland, was born with six heart defects and is now waiting for a liver and heart transplant.

The wait has been longer for Manning because she needs someone who is between 60 and 80kgs so both organs fit.

In the meantime Manning is calling on the government to make organ donation in New Zealand mandatory due to the low number of donors. She lodged the petition last week and signatures can be added to it until October.

“Even if the law doesn’t change it, it will get people talking about it. Not a lot of people do talk about becoming donors and stuff unless it’s on the licence and what not. So as long as it got the conversation started I was happy.

“People need to realise that no one is promised tomorrow and anything can happen and accidents can happen.”

In New Zealand, even if someone indicated on their drivers licence they wanted to be a donor, their family could over-ride the decision.

Jessica Manning was born with six heart defects and is waiting for a suitable heart and liver donor.

Manning was pushing for a model which meant people would be presumed to be donors unless they opted out. But even if that did not go ahead, Manning urged the government to invest in more education about being organ donation.

However, Health Minister David Clark said presumed consent was not a model he would be pushing and instead supported the Deceased Organ Donation and Transplantation National strategy that focused on the wishes of the donor’s family.

“Even if an individual makes it clear before their death that they wish to donate their organs, in New Zealand that person’s family/whānau have the absolute right to decline donation of their deceased loved one’s organs, and their decision must be respected.”

Clark said there had been an increase in organ donation in recent years in New Zealand supported by a range of new initiatives and he planned to announce more progress later this year.

Over the last five years deceased organ donations had doubled with a record 73 in 2017. Those donations resulted in 215 people receiving life saving heart, lung, liver, kidney and pancreas transplants compared to just 115 people receiving organs in 2013.

Organ Donation New Zealand medical specialist James Judson said presumed consent would not be the “quick fix” to New Zealand’s perceived organ shortage and instead he believed the key was better education.

“Further increases in deceased organ donation in NZ will require further work with ICU staff and their hospitals, work that ODNZ is already doing within its current resources.”

Judson also encouraged New Zealanders to discuss whether they wanted to be donors and what organs or tissues they would donate.

“What many people don’t realise is that organ donation can only take place if a person is in intensive care, on a ventilator, usually with severe brain damage. Fewer than 1 per cent of all deaths occur in this way in NZ.”